Brain Health

Brain Injury Grief: The Experts Begin to Recognize and Define this Profound Loss

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The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.

Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”

I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.

Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”

I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?

She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”

I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.

Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…

“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.

“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”

Brain Power

Eyes Sharpening

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Union Station Toronto ColumnsIt’s a gusty day, clouds billowing up on each other, stretching apart to reveal dark patches of blue sky and let the sunlight through. Once again this week, I’m standing on the sidewalk, against the wind, staring down down down the street, all the way to the third traffic light in the distance. Red red red green. Or is that the fourth traffic light I can see to?

How is this happening? Seeing more depthlike depth in distance objects was weird. And wonderful. Seeing the whole of a computer display in one go was oh so nice. But now with another new improvement, I’m boggling. How is this possible?

My brain is adapting. A bit unsteady at sudden moments. Back to staring and taking in buildings, people, signs, colour nuances on the Royal York hotel stones, details in bricks, Union Station’s warmth and richness of colour, before I can feel my brain release and I can continue to walk.

Brain Biofeedback

Vision Update: Seeing Farther

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Photos of new streetcar door jambs and enormous windows.Brief vision update here. I don’t want to jinx it, but for the last couple of weeks, my far-distance and panoramic vision seem to have stabilized. Does this mean my brain has stopped trying to shut down the firehose of new visual information that the surgery turned on? Does this mean it has ceded the battle and is coming to terms with both eyes working together and feeding more efficient data to the visual cortex?

My depth perception is still being integrated. I’ve discovered that reciting to myself over and over “integrate” as I step down each step actually integrates my proprioception (sensory information from my feet) and perception (sensory information from my eyes) and makes stepping down and knowing where I am on the staircase much much easier. Huh. This week I got to the landing and knew it without having to stop and check my feet and feel unsteady until I did. W00t!

I’m slowly adapting to the new streetcars. Because of the TTC’s systemic bias, they have created door jambs that have yellow paint not at the outside edge but behind the black bumper. Only the accessible door has no black bumper; still, the slope down and gradual grey edge makes it difficult for my brain to perceive what is streetcar and what is pavement. And for some reason, it’s also more difficult to discern how high the step is when getting on. The old streetcars with their white-painted edges are easier to step up into, though it’s still more challenging than regular stairs . . . maybe because they’re steep??

Anyway, I bang my cane down on the surface I want to step on to, and that tells my brain where my foot goes.

The large windows and sloping floor (why oh why did the streetcar designers think sloping floors are safe on a moving vehicle‽) can induce nausea in anyone, I’ve learnt. I suggested to a friend with a perfectly healthy brain that she sit in the accessible car where the floor is flat. Nausea solved for her. But for me, it’s the large moving landscape visible outside the enormous windows. I’m assuming this moving-scenery-induced nausea/dizzy will ease over time, and I’m seated anyway, so I won’t fall.

I was starting to get quite stressed over the thought that my new vision would reverse and my brain would revert to “default.” I’m heartened that the brain biofeedback, and perhaps the increased light levels on my audiovisual entrainment device to stimulate the retina, are enforcing the new vision.

Health

Concussion Recovery is a Series of What are my Priorities?

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Slide of graphic of man looking into his head. From Healing the Brain conference.

As I come out of the narrow, tortuous pass that is a life focused on treating brain injury and the subsequent PTSD, I’m faced with the big question: what are my priorities?

The first time I said bye to focusing on treating my injured neurons, I hunted for the supports I needed to be functional. That was my priority then.

“T1: To me “treating the whole person” is about discussing how care plans fit into the patient’s life and GOALS vs. the patient figuring that out later in a vacuum. #patientchat”
http://twitter.com/btrfly12/status/956952160234868741

As I begin writing this, I’m also scrolling through Twitter #patientchat; one person tweets that it would be nice if the physician discussed how care fits into the patient’s life and goals.

It would be!

Up until 2013, for me, my life goal was getting back to my life. Oh, I knew I was writing differently, I probably couldn’t return to computer programming, and writing was the only thing I could realistically do with my fatigue and propensity to suddenly not be able to work for long stretches. But somewhere in me, I believed I could return to “normal.” Return to working several hours a day. Return to normal socializing. Return to earning an income. Return to never having to attend another fucking health care appointment.

Then life and PTSD gave me a rude wakeup call. I had to refocus on health care appointments and also religiously treat my injured neurons at home just so that I could get through the day. That went on for years until a confluence of treatments in 2017 finally slayed the chaos in my brain. Ruminations like a hamster in a steroidal wheel slowed then almost faded away.

I resisted then finally acquiesced to the knowledge that my PTSD was not going to be treated in any curative way (some day I’ll write about why people with complex PTSD aren’t getting better and life is a daily struggle to keep functional and nights a nightly hell of tossing sleep). Then this past Christmas, I tired of treating my brain injury too.

I quit.

Yeah, okay, I’m still attending my brain biofeedback and I continue reading rehab with my neurodoc and I use my home devices just enough to keep pain of every kind at bay and my body ticking along as best it can. But I’m not doing any homework. I’m not thinking anymore about how to work on this part of my injury or that part. Any thoughts on brain injury and treatments are to keep my book blog pages updated. And I’m not working at all on treating my PTSD. It is what it is.

I want to get back to normal life, what I now define as: a day not consumed by health care.

But what do I want to do? Write novels for myself. (No one is buying them and I’m not made of money to spend on taking them to the final published book form so once I write the first draft, what’s the point of revising and editing.) Philosophy of Mind requires me to read. A lot. And really hard stuff. Well, that’s not going to happen. I didn’t get the professional help when it would have made a difference. (Health care professionals are so focused on what they do and what the average is for this function or that that they miss the rare opportunities to radically help their clients.) On the other hand I learnt of the video courses on the Great Courses Plus app, which I’m wending my way through very very slowly. I enjoy photography but can’t seem to dedicate time to it and haven’t been able to in years. I can design and create websites, though it’s on/off, sucks me dry of any energy, and oftentimes feels like there’s a thick concrete wall between me and understanding the back end of a website where all the coding takes place. I can help people with brain injury, like I did last November with NaNoWriMo and like I’m trying to do with Concussion Is Brain Injury, as long as I have energy and don’t have to do it for longer than a month at a time. There are other things I’d like to do. Cooking would also be nice; to make myself yummy nutritious meals without the energy suckage would be awesome.

I return to the question: what are my priorities? I don’t know.

Brain Biofeedback

Fatigue Meets Weather Equals . . .

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Dry air. Deep cold that penetrates into the tiniest lung cells. Early mornings interrupting fractured sleep. Brain goes pfft, I’m not doing this, regulating the nose, the throat, the heart, and lungs. Let’s go back to bed.

But bed wasn’t doing me good. I had to keep my head elevated to keep the drips out of my throat and descending into my lungs to create bad news.

I dragged myself out to brain biofeedback where I found to my happy surprise that gamma enhancement made my throat stop wanting to cough hack scratch. Phew.

I was also using low-intensity light treatment on my neck and upper back to calm the twitchiness in my throat and lungs. I didn’t know if it would work — I was kind of like how I am on the computer: let’s see what this will do . . .?

It helped, like the gamma did. But the weather continues its assault, and I’m not resting properly. Soooo . . . Just don’t talk a lot!

Brain Biofeedback

The Presbyopic Lens of the DSM Mutes this Patient with Brain Injury

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Love BotThe main character in my new novel has no voice. She’s not me, yet, too, I am muted, most recently, in the relationship with my neurodoc. It’s come to an impasse. He is clinging on with rigid ferocity to the DSM and, though he’s interested in the new ideas of neuroplasticity, he continues to adhere to the familiar-to-him chemical model of the brain, while I demand that he sees my injury as an injury, meaning my issues come out of physiological damage and as the neurons heal, what he calls moods and traits will and do suddenly disappear or flip, something the DSM and chemical models don’t account for.

He’s not alone.

Psychiatry has devolved into prescribing chemicals. Take this and see me in six weeks. If one chemical formula doesn’t work, try another or add another. In the brittle brains of medical specialists, the brain has become a chemical bath that can be manipulated by ingesting or injecting the right solid or liquid chemistry. Forward thinkers aka health policy experts and bureaucratic innovators further maneuvere psychiatrists out of that old fussy model of talking and into dispensing increasingly sophisticated variations of the same type of chemicals. Community-minded forward thinkers look to generics as being exactly the same as brand names: cures for cheaper, thus more responsible to the community, except psychiatric medicines don’t cure. They just mask and symptom manage.

Accordingly, brain injury medical specialists and mental health forward thinkers have evolved treatment beyond the intimate therapeutic alliance between physician and patient to infrequent expert consults and time-limited overview, never mind that a therapeutic alliance is the best buttress against “noncompliance.” When you’re heard and you feel cared for and you’re connected to your physician, especially your psychiatrist, you’re more likely to have your concerns heard, to be given therapy and medicine that’s better suited to your needs, and thus to comply.

But in the forward thinking brittleness of evidence-based modern psychiatry, relationships are obsolete. (That reflects our society; and we wonder why North America is in turmoil.) A relationship that respects and hears the patient, that values their insight and uses it to diagnose and treat, that works with non-medical health professionals, seems to be an anomaly. Add in the lifelong demands of brain injury that’s not static over time, where communication is challenging yet the only type acceptable by the brittle progressive psychiatrists is verbal, and you have an impasse when a patient like me objects to being unheard, devalued, and sexist and culturally stereotyped through the presbyopic lens of the DSM.

If I’d had oodles of money, back in 2009, I would have sought out a psychologist familiar with brain injury. I had been told back in 2001 — and discovered for myself — that you really need a mental health professional who knows and understands brain injury in order to receive good, effective, and understanding therapy to manage the injury and its social, psychological, and economic consequences.

I would now add: needs to be someone who is willing to learn and adopt the neuroplastic model of the brain, to learn how brain injury affects women worse than men, and how gender inequality affects their social and economic lives as well as taking into account cultural differences.

Progressive men who feel proud of how they empower women and grant them equality don’t react too well to women who’ve known all their lives that they’re equal under God and don’t need to be granted it by a man, who come in expecting to have a say in their diagnosis and therapy, even when unable to communicate in the traditional way.

Unfortunately I didn’t have money flowing out of my coffers to afford a psychologist. In Ontario’s version of Canadian universal health care, the government funds only psychiatrists. And so that’s who I had to look for. The University of Toronto has hundreds, almost a thousand, psychiatrists affiliated with their Faculty of Medicine. Of those a handful work in neuropsychiatry, maybe a few understand brain injury, and hardly any work with people with brain injury in the way they need: weekly talk therapy using a team approach with health care professionals who actively treat the broken neurons. The psychiatrist ought to provide the emotional therapy and the others the physiological treatments. Some psychiatrists are joining their psychology colleagues in moving from the DSM and chemical bath model to the neuroplastic model of actually permanently healing broken people. Some so that they can work better as a member of a team; some so that they can actually treat their patients both emotionally and physiologically. I don’t know who would pay when a psychiatrist uses brain biofeedback, for example, as part of their therapy sessions. Our forward thinking bureaucrats and politicians probably ensure it isn’t taxpayer-paid health care. And I don’t think many or any of these psychiatrists are focusing on people with brain injury.

But I bet you no one is approaching reading rehab in the way my neurodoc and I are doing it (even though I became so exhausted emotionally from begging and begging for help that when he finally assented, I could no longer do the work on my own and I’ve become mute in asking for the fullness of what I need). So somehow, though he shot our therapeutic alliance to hell with his rigid clawed grip on the inappropriate-for-brain-injury DSM, he’s committed to going out of his way to help me with regaining my reading. I think that’s a metaphor for my post-brain injury life: every heavily fought-for improvement has come at a price.

Brain Power

Adventures in Brain Injury: Training Vision in the Winter Light

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Winter sunlight on the waterWinter light is not the same as summer sunlight. You’d think after practicing walking — seeing, perceiving with both eyes and feet together, learning where I am in space — during strong and long summer sunlight hours, I’d have no trouble in the winter. Nope.

It isn’t just the snow.

The sunlight is sharp, throwing long rays through polarized sunglasses. Bare trees cast patterns of shadow and blazing light in a repeating rhythm as you walk. No matter the hour, the low sun sends photons into your eyes instead of down to the top of your head. And white, gleaming snow reflects it back up.

My brain remembers how my scarred eye used to shut and, in its diabolical plan to return my vision to what it was used to, tries to convince my eye it still doesn’t like the light. I have to fight to perceive that its light tolerance has improved, except when looking extremely sideways to the left. Even when back indoors, my brain is like, hey, it didn’t like the light so let’s shut it against inside light too! Grrr. It doesn’t help my good eye is sensitive to the light as well. (Yes, before my brain injury and eye surgery, I’d walk familiar routes with eyes shut on bright winter days.)

My CNIB guy suggested I get the sunglasses with the top and side panels. That way sun rays can’t sneak around the frame edges. Old people glasses, I think. But then he’s way younger than me and his pair not only has the panels but also sit over his glasses. Then I noticed the baby boomer generation growing older means seeing others my age wearing them too and looking not old, looking chic. But where do you get them?

Brain Biofeedback

Eyes and Heart, Neurons and Brain Connecting Again

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Last year, after eye surgery, my iPhone display looked enormous. These days, it looks teeny weeny. Amazing how adaptation changes perception. I no longer get dizzy moving my eyes across a wide screen. My brain is used to the sharper-looking text and more depth in the screen colours. My panoramic vision isn’t solid yet, but I’m used to seeing my iPhone display left to right, top to bottom, in one go. No more bits missing like before the eye surgery.

I still very occasionally get double vision, partly because my brain is still fighting to return to my pre-surgery default and discard the new binocular information. But brain biofeedback at PZ (top middle back) to inhibit 16-20 Hz, the thinking brainwaves, seems to be helping me win that fight.

(They call the excessive 16-20 Hz “high-beta spindling.”)

Slowly, panoramic vision outside on the streets and in parks is solidifying – one marker of that is being able to cross side streets without having to consciously narrate every step like I have had to since the eye surgery. Now after brain training I can see the traffic on both peripheries of my vision and process it in real time.

My proprioception is improving again; I’m able to distinguish myself in space with full up-down side-to-side awareness, which means I’m not returning to my old default with bits missing in that awareness. (I’ve just realized I don’t keep bumping into door jambs like I used to!) The first week of November I was able to discern the bottom step of the TTC stairs from the landing peripherally (and for the second week through my feet too) while looking ahead at a fixed point and walking down slowly and carefully.

This is huge!

Being able to go down the visually inaccessible steps on the TTC is a lot safer when one can see the low contrasts and feel the differences. It’s a lot of work and fatiguing trying to navigate the bloody TTC when not able-bodied, able-eyed, able-brained. Have I mentioned I hate it?!

Let’s think about more positive things — like my heart! This week was another in a series of OM Effing G!! Did you seeeee that?!!! As I mentioned before, the goal back in 2012 was to raise my HRV (the measure of how well my heart syncs with breathing) from the basement to a modest 10 and to lower my heart rate from freaky 130 to double digits. Also, to get rid of the scary-ass rises to 170 and drops to 30-50 beats per minute. It’s been a slow slog. Low-intensity light therapy (concussion protocol) where the lights are over my cerebellum definitely began to move things along in the right direction. But now–

My low frequency HRV got to 8.57!!!!!

CZ LF Numbers during HRV and Gamma Training

8.57 uV for low frequency heart rate variability (HRV) during HRV training — basically deep breathing — is stupendous enough but to get 8.24 during gamma brainwave training and again have LF higher than sympathetic nervous system activity (VLF) is WOW!!

PZ LF Numbers

LF wasn’t as high during PZ training to inhibit 16-20 but look at that — 5.36 during the first neurofeedback screen! Sweet.

Reducing my 16-20 Hz brainwaves is not only cementing my improved vision, it’s also been working on my trauma-related round-and-round thoughts that whirl up grief, distress, hurt into an ever-intensifying tornado. I didn’t mention the emotion effects to anyone because we were focused on my vision and I wasn’t sure if it was for real, but recently I’ve become sure. My thoughts drop out of the whirling and into clear thinking. Clear thinking is the antithesis of trauma and flashbacks. Clear thinking settles emotions. Relief. Even if it’s only for a few hours or days.

But how is reducing high-beta spindling helping my HRV too?

I came across an article that said the cerebellum is involved in emotional control. We already know it’s tied into the heart via control of the autonomic nervous system. Soooo, using logic — if the cerebellum is involved in emotions and so is the area around PZ, then they must network. And then flow from the emotional control part of the cerebellum into the heart control. Brain injury and healing of injury is like exploring the brain.

Brain Biofeedback

Proprioception Efficiency Improving after Eye Surgery

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I’m back on the weekly brain training track: enhance gamma (39-42 Hz) brainwaves for three neurofeedback screens; inhibit 16-20 Hz and enhance SMR (12-15 Hz) brainwaves for the next three neurofeedback screens. The latter three are supposed to help me adapt to and keep my improved and more efficient vision, perception, and proprioception.

Right after this week’s training, I got a taste of the latter.

I normally go down most TTC steps slowly and carefully. It’s easier and quicker to walk down their stairs when my eyes are on the steps in front of me instead of looking ahead. But with that method, I only see the steps. I don’t see people coming at me or signage or anything else. So I make myself look ahead. Gotta see what’s around you! The problem is the last few steps. For whatever reason, they give my feet the willies. I slow down and stop on them, look down, then continue to the landing. The step I stop on has been improving from two or three steps before the landing or the second step before to the last step before. This week (for the first time?) I felt distinctly the difference between the texture of the step and the texture and flatness of the landing. Yeah, I’m wearing shoes, but I could feel a difference in the hardness and how the landing had a bit of a dip from where many feet had worn down the terrazzo. Being able to feel the difference made it easier to know where I was and give my feet confidence to keep stepping down until I touched down on the landing. I didn’t have to look down to check (though I did from habit, except the last time — sweet). Since this is all at the conscious level and not yet automated, I do it slowly, slowly. As my brain learns and stops trying to return my vision back to what it was used to (so annoying), it’ll become automated gradually and I’ll be able to speed up and do it automatically like I used to before my eye surgery.

The TTC uses an enormous variety of tiles for its steps. Most of them have low contrast. My fave is when they replace a light tile with a dark grey one — makes it grab my eyes, scream look at me, look at me, as if walking down and up TTC steps wasn’t hard enough. Just another wonderful example of the TTC’s systemic discrimination against those with visual or cognitive impairments. I guess we’re not supposed to use public transit.

Anyway, getting a taste of my increasingly efficient proprioception was way cool.